Newly diagnosed Graves/graves eye disease!!!!!! - Thyroid UK

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Newly diagnosed Graves/graves eye disease!!!!!!


newly diagnosed Graves/graves eye disease.

I was severly overactive..In feb I had a free T4 of more than 70 pmo/l and fully surpressed TSH .

i had the usual symptoms including puffy eyes/hollows.

I looked awul .My hair was thinning. My cheeks sunken.

I was put on carbimazole 10 mg twice day and Propanol 40mg twice daily.Most of the symptoms subsided. My eyes looked the same. Went to the endo yesterday he said my heart rate is about 100 per min. Blood pressure 151/90 mmHg?

But now he says I says I got mild-mode Graves eye disease. with preoperative puffiness mild bilateral proptosis. No idea what it means?

He says i need to increase my dose to proponal- 3 x 40mg.carbimazole .10 mg 2x daily?

Do you think this dose is safe? Do you think it would help my eyes ?

Please advise you're suggestions

Thank you greatly(:

7 Replies

Don't know about the Propanol, or the TED (thankfully, I've escaped that for now), but I'm on 2 x 20 mg/day of carbimazole, and I seem to be tolerating it ok.

I'm on a calcium channel blocker rather than a beta blocker, but I think both help with symptoms such as breathlessness, rapid heart beat, tremors and also bring down the high blood pressure.

Some GPs (including mine) don't prescribe carbimazole at all if they think you will see the endo relatively quickly, and where they do, they seem to stick to relatively low doses, probably aimed at stopping things getting worse than actually resolving them (which is usually a matter for the specialist) , so I don't think you should be too worried that the endo has increased the dose. Have they given you a date for another appointment, and further bloood tests ?

My endo explained the treatment plan, how often I'd need tests etc, so if they didn't explain this to you last time, perhaps you could ask at your next appointment .

in reply to Valarian

hi v

my endo says i don`t need to see him now. Just arrange blood . My gp really rubbish to. He said my sympons should

go if i up my dose?

in reply to youb

At least the endo has asked for regular blood tests. You should be able to get copies of these from your GP.

The wide pulse rate (difference between the two values of your blood pressure) is apparently not unusual with Graves

My hair isn't too bad, although I had noticed more on my brush and in the shower than usual. This seems to have stopped, so hopefully you will find the same.

Hi youb, Sorry to hear about your diagnosis. I'm newly diagnosed with Graves too - haven't seen endo yet tho. I have little experience of this but thought you might find this helpful.

GP put me on daily doses of 5mg carbimazole 3 x day and 20mg propranolol 3 x day at first then increased propranolol to 3 x 40mg for a while - that reduced my heart rate greatly quite quickly (down from near 100 to 54 which is too low!) so now back to 3 x 20mg propranolol each day. So you would be safe on that dose of propranolol and it might not be needed that high for too long. I felt much better on the higher dose (everything was calmer and much easier) and reducing it has been a weird struggle over the last week but needs must.

Carbimazole worked for me within 8 weeks on 3x5mg daily dose and bloods show T4 and T3 in normal range but TSH still -0.01 so not there yet. Am still on same dose for now.

Not easy being on either meds but necessary. You will be well looked after.

Best of luck and take it easy.

thanks guys! i am feeling much better. But my outside does not reflect it! Just want to look semi decent . hope my eyes look better and my hair?

in reply to youb

Ask for a referral to the eye unit, maybe ?

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